End of life care and carers’ needs
Becoming a ‘carer’ may be an additional role that develops as part of a relationship between two people – but it doesn’t replace the roles and relationships that families have lived with for many years. Carers speak about being a husband or wife (or a son or daughter) first, and then becoming a carer to that person when illness or disability occurs.
Caring is what I do. He would have done the same for me if the situation were reversed.A woman speaking about caring for her husband who has dementia.
When we start working with a family it is important to remember that the relationship between the family carer and the person with dementia remains – but with some profound changes. Physical, emotional, social and financial changes over time can generate enormously difficult feelings – guilt, depression, resentment, anger, isolation and stress – and of course, as a result of these, the relationship changes (for more on these sorts of issues, look at the section on ‘Working in partnership with carers’).
Loss, grief and dementia
One of the most powerful feelings that people experience when someone close to them develops dementia is a sense of loss and grief. Carers may not recognise these strong feelings when the person with dementia is very much alive and in need of care and support.
A carer may grieve many things:
- the person they once knew
- the future they had planned together
- the relationship they once shared
- the companionship, support or special understanding
- their own freedom to work or to pursue other activities
- finances or a lifestyle that they once took for granted.
Guilt and stress
Many carers blame themselves if difficulties arise in the caring situation. It may be that they are unable to understand what the person with dementia is trying to communicate. If the person with dementia becomes ill or if the carer cannot resolve a particular problem (such as getting the person with dementia to drink enough water), the carer may find this increases their stress levels markedly.
Sometimes people assume that when a person with dementia moves into a care home this will largely resolve the stress of caring. Typically, this is not the case and in fact may leave the carer with feelings of guilt or a sense that they have ‘given up’. This in turn may make them critical of the care in the care home.
Making difficult decisions
By the time the person with dementia nears the end of their life, carers may feel they have developed good practical support networks. However, many feel unprepared when it comes to making difficult decisions about end-of-life care, such as decisions about how to respond if the person needs hospitalisation or a crisis develops.
An advance care plan or an advance decision to refuse treatment made earlier by the person with dementia can give much-needed clarity at times when difficult decisions need to be made. (For more on this area, see the features on ‘Advance care planning’ and the ‘Helping people make their own decisions’ in the ‘Making decisions’ section.)
But, to date, most people with dementia have not made these formal arrangements. As a result, in reality often it is carers who are drawn into making difficult decisions – either directly or indirectly – at the very time they are feeling highly distressed about their loved one’s situation. It is important to note that where an advanced decision to refuse treatment does not exist or there is no one appointed to make such decisions then a collective decision must be made using the best interests framework of the Mental Capacity Act (for more information see the feature on ‘Advance care planning’ in the ‘Making decisions’ section).
During this particularly stressful period, the calm and informed support of skilled staff could make an enormous difference.
What can carers do in the final stages?
In the final stages of dementia the person may not be able to recognise or communicate with their family. Many, if not most, families find this a very painful stage. Although the relationship seems very nearly over, carers may find it difficult to mourn fully because the person is still alive.
And yet, there are things you can suggest that may help.
Encourage gentle touch when other forms of communication seem difficult. Holding the person’s hand, sitting with an arm around them, or even gentle hand massage, may be comforting for both the person with dementia and their loved one.
Set up a system for playing music, particularly music that was well liked by the person with dementia. This may bring comfort and promote a positive atmosphere.
Consider making some adjustments to the immediate care environment: this can help promote a calmer and more comfortable environment. Try to remove any loud, startling or intrusive noises, and have soft lighting. Are comfortable chairs available for visitors and carers? (see ‘The environment’ section)
Try using aromatherapy and essential oils in atomisers or in hand massage.
Suggest having familiar, valued objects – say a favourite family photo – close at hand to touch and look at. There may be other elements of the person’s background that may provide comfort and familiarity to both the person with dementia and their carer (see the ‘Each person is different – so get to know me’ feature in the ‘Getting to know the person with dementia’ section).
Help the family to recognise that they have done all that they could, and to consider getting some extra support for themselves (see ‘A listening ear’ below).
Emotional support for carer
One of the best things we can do is to support carers to be able to talk about their feelings, and this is particularly true at the end of life. There are many possible sources for this emotional support for carers: perhaps a valued professional (for example, a mental health nurse), a carers group, a religious organisation, or even a close personal friend.
Another avenue for support – but unfortunately only available in a limited number of places in the UK – is the Admiral Nursing service. Admiral Nurses are mental health nurses who specialise in dementia. They work in the community with families, carers and other supporters or paid carers of people with dementia throughout the illness and offer
sinformation, practice advice and emotional support. For more information, see ‘Further reading and resources’ below. Am I still a carer?
Coping after the person dies
Each person is different. Some carers find that they grieve so much during the course of the illness that they have no strong feelings left when the person with dementia dies.
Others experience a range of reactions that at times may be overwhelming, including:
- numbness, as though their feelings are frozen
- inability to accept the situation shock and pain, even if the death has been expected for a long time
- relief, both for the person with dementia and themselves
- anger and resentment about what has happened
- guilt over an incident that happened in the past
- feelings of isolation
- a feeling of lack of purpose.
Carers may find it takes a long time to come to terms with the person’s death. Those who have been full-time carers for a long time may be left with a huge void when this role ends. Often caring for a person with dementia over many years may result in the carer feeling cut off with a loss of friends and social contact. When they no longer find their days spent caring they may find it difficult to re-establish themselves.
Access and download additional resources
Further reading Open
Admiral Nurses are specialist dementia nurses who work in the community with families affected by dementia. Admiral Nursing DIRECT is a telephone information and support line for people with dementia, family carers and professionals run by experienced Admiral Nurses. Contact Admiral Nursing DIRECT on 0845 257 9406 or email firstname.lastname@example.org
Cruse Bereavement Care: this national charity run a telephone and email helpline for bereaved people on 0844 477 9400. email email@example.com
National Council for Palliative Care (2012) How would I know? What can I do? How to help someone with dementia who is in pain or distress. London: NCPC.
Pace, V., Treloer, A. and Scott, S. (2011) Dementia: From advanced disease to bereavement. Oxford: Oxford University Press.
Whitman, L (ed) (2009) Telling tales about dementia: Experiences of caring. Jessica Kingsley, London.
Useful links Open
Care of dying adults in the last days of life
This December 2015 guideline from NICE (NG31) covers a range of issues, including communication and shared decision-making, as well as hydration and managing common symptoms, in the last two to three days of life.
Dementia and end of life planning
This information on the NHS Choices website presents information on care at home, hospice care and palliative care for people with dementia and includes a five-minute video on palliative care at home for people with dementia.
Difficult conversations: making it easier to talk to people with dementia about the end of life
The National Council for Palliative Care (NCPC) and the Dying Matters Coalition produced this booklet to help both professionals and carers of people with dementia to open up conversations about end of life wishes, particularly early in the dementia process. The booklet is available to download from the NCPC or Dying Matters Coalition website for a small charge.
End of life care for people with dementia living in care homes
This 2012 research briefing from SCIE looked at this issue from a range of perspectives, including people with dementia, family carers and care home staff, and found that more research and support is needed in this area.
Identifying pain in people with dementia
The pharmaceutical company NAPP ran a campaign during 2014 called ‘See Change: Think Pain’ in which promoted awareness about the importance of identifying and responding to pain in people living with dementia. NAPP has developed a range of resources to support the campaign, including 10 videos, a booklet for care staff, a booklet for family carers, a poster, and a report of a major survey of care homes on the issue of pain in people living with dementia.
Living and dying with dementia in England
This 2014 joint report from Marie Curie and Alzheimer’s Society investigates the barriers to people with dementia receiving good end of life care in England.
Time to talk?
This leaflet put out by the Dying Matters Coalition looks at how to start conversations with people with dementia about end of life care, and it covers ‘What to talk about’ and ‘What happens if you don’t talk’, and ‘When to talk’.
Dementia end of life care: special interest group (SIG)
A new network run by Dementia UK and Hospice UK provides an interactive forum for practitioners with an interest in dementia end of life care. The group meets regularly and summaries from the meetings can be downloaded from the Hospice UK website.
Related pages from this section Open